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Im worried possibly paranoid about Samuel....advice....

Posted by on Jul. 25, 2014 at 8:23 AM
  • 15 Replies

Hello ladies!  So I don't know if Im paranoid or not.  Ryan my 3.5yr has autism and was obviously not a typical infant so I have nothing to go by when it comes to Samuel.  Samuel has been diagnosed with mod/severe sleep apnea.  He obstructs 9.1x an hour for 15seconds.  The ENT surgeon scoped him and said surgery isn't a good option.  He has a small airway and small nose.  He had RSV 2x, yes 2x.  So the RSV caused damage along with having the small airway and nose.  So he always sounds like a pug basically.  Lately dh and I have noticed only while Samuel is sleeping he shakes his head from side to side over and over again.  He also lifts both legs straight up in the air and slams them down.  Its so loud he wakes dh up who can sleep through anything.  Its hard to describe I know but he doesn't wake while doing these things.  Ive never heard or seen a baby do these things while sleeping.  I worked last night and when I came home dh told me Samuel head shaking while he was sleeping was intense and he wouldn't stop.  Im going to call the ped as soon as they open as now dh is now concerned too.  We were talking last night and we thought god could he be seizuring?   I don't want to google anything as that just freaks me out.  Does anyone have experience with this?  I hope Im not being crazy but I just don't see this as typical sleeping behavior but what the hell do I know.  Thanks in advance to any support/advice.  

by on Jul. 25, 2014 at 8:23 AM
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Replies (1-10):
Nicole_2007
by Member on Jul. 25, 2014 at 10:07 AM
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I would be concerned to.  That has to be very scary.  I would be afraid that he is having seizures.  I had a friend whos 1 year old was life flighted yesterday because of seizures.  Its best to get him checked out just in case.  Or he could be having a hard time breathing.  I would defiantly call your doctor and get him in to be checked right away

jjamom
by Michele on Jul. 25, 2014 at 10:16 AM
1 mom liked this
Hugs! He has definitely been through a lot! My little guy also had OSA and obstructed an average of 9x per hour, but tonsil/adenoids surgery helped. He also has small airways, so getting those huge tonsils and adenoids out of the way left a little more room for air flow.

My son has also always been a restless sleeper. Although I have never seen him do the head shaking thing, he has done the leg thing you mention. We had a baby monitor in his room for the longest time and it is really loud when he does it. He has a race car bed and I have to periodically move it back to place because he actually moves the bed while sleeping! And his last sleep study showed his OSA to be resolved! He has never shown any seizure activity on any of his sleep studies and it doesn't look or sound like seizure activity to me when I see it. But, like I said I have never seen him do the head thing either.

When they did Samuels sleep study, did they mention neurological sleep apnea or anything about seizure activity?

I hope you get some answers really soon!
mandee1503
by Amanda on Jul. 25, 2014 at 11:13 AM
1 mom liked this
Scary. I hope you get answers quickly.
charley31
by on Jul. 25, 2014 at 1:30 PM
Thank you for the info on your son. They didn't mention anything about seizures when he had the sleep study but he wasn't doing the legs and head thing. I called the ped. Of course my fav is on vaca for a week. All the drs there are great I just like one in particular. He knows me and Ryan and what I've been through already with Ryan and now with Samuel. So we have an appt for wed. I'm so anxious. I'll keep you posted.

Quoting jjamom: Hugs! He has definitely been through a lot! My little guy also had OSA and obstructed an average of 9x per hour, but tonsil/adenoids surgery helped. He also has small airways, so getting those huge tonsils and adenoids out of the way left a little more room for air flow.

My son has also always been a restless sleeper. Although I have never seen him do the head shaking thing, he has done the leg thing you mention. We had a baby monitor in his room for the longest time and it is really loud when he does it. He has a race car bed and I have to periodically move it back to place because he actually moves the bed while sleeping! And his last sleep study showed his OSA to be resolved! He has never shown any seizure activity on any of his sleep studies and it doesn't look or sound like seizure activity to me when I see it. But, like I said I have never seen him do the head thing either.

When they did Samuels sleep study, did they mention neurological sleep apnea or anything about seizure activity?

I hope you get some answers really soon!
letstalk747
by Ruby Member on Jul. 25, 2014 at 2:22 PM
1 mom liked this

BE VERY CONCERNED , SEE THE dr today

Bluecalm
by Silver Member on Jul. 25, 2014 at 2:24 PM
1 mom liked this
Both my boys have obstructive and central sleep apnea and sleep with machines at night. My oldest was doing things like sitting bolt upright when he had an apnea and doing a lot of thrashing around. Can you lie him on his side to sleep?
Momof4AEMW
by Gold Member on Jul. 25, 2014 at 2:48 PM
2 moms liked this

Hmm.  I would be talking to a doctor and asking for another sleep study being that he wasn't doing the log/head thing at the last one.  Sleep studies do check for seizures at the same time, but they can develop at anytime, so who knows.  My daughter has the tiniest of airways, small nose as you say.  We did remove tonsils and adenoids and are going back in now for lingual (?) long tonsils and base of tongue reduction surgery to try to help it.  She also obstructs 9-10 times an hour and drops her oxygen stats pretty low.  It is no fun.  Have they said the cause of the small/floppy airway in Samuel?  He appears to be a healthy/average sized kid when I see your pictures.  I just wonder if he is on a normal growth curve why his airways are so small and what the docs plan to do to help you/him through this. You mentioned no surgery, is that just because he is still so young, or do they not think it would help? My daughter has down syndrome, so we know the cause of hers and can't change that.  We just keep working with options to help her.  I know you've been doing lots of testing.  Did they give you any answers yet as to why this is going on?  Hugs!  I know you're stressed and worried!

jjamom
by Michele on Jul. 25, 2014 at 3:03 PM
1 mom liked this
I feel for you, our pediatrician is always out of the country when I need him! Just last week I needed to take my little guy in and of course he was out of the country again. We did see another wonderful doctor in the practice, but ours knows all of my kids so well, especially Alex.

I hope you get some answers from your pediatrician or maybe a referral to a specialist so you can get to the bottom of things.

Quoting charley31: Thank you for the info on your son. They didn't mention anything about seizures when he had the sleep study but he wasn't doing the legs and head thing. I called the ped. Of course my fav is on vaca for a week. All the drs there are great I just like one in particular. He knows me and Ryan and what I've been through already with Ryan and now with Samuel. So we have an appt for wed. I'm so anxious. I'll keep you posted.

Quoting jjamom: Hugs! He has definitely been through a lot! My little guy also had OSA and obstructed an average of 9x per hour, but tonsil/adenoids surgery helped. He also has small airways, so getting those huge tonsils and adenoids out of the way left a little more room for air flow.

My son has also always been a restless sleeper. Although I have never seen him do the head shaking thing, he has done the leg thing you mention. We had a baby monitor in his room for the longest time and it is really loud when he does it. He has a race car bed and I have to periodically move it back to place because he actually moves the bed while sleeping! And his last sleep study showed his OSA to be resolved! He has never shown any seizure activity on any of his sleep studies and it doesn't look or sound like seizure activity to me when I see it. But, like I said I have never seen him do the head thing either.

When they did Samuels sleep study, did they mention neurological sleep apnea or anything about seizure activity?

I hope you get some answers really soon!
charley31
by on Jul. 25, 2014 at 3:36 PM

Ugh Im sorry you have two boys with this issue.  I tried getting him on his side but he always goes to his back.  We were swaddling him but we stopped.  I thought he was doing it because of the swaddle.  I know probably not smart but all I have is my older son to compare him to and he isn't typical so I didn't know what this was.  I think Im calling the ped back and asking for an appt on monday rather than wed.  Im sure I wont get answers, just a referral to another specialist :(

Quoting Bluecalm: Both my boys have obstructive and central sleep apnea and sleep with machines at night. My oldest was doing things like sitting bolt upright when he had an apnea and doing a lot of thrashing around. Can you lie him on his side to sleep?


charley31
by on Jul. 25, 2014 at 3:43 PM

Yeah Im sure they will order another sleep study.  Samuel was supposed to see his pulmonary Dr this week but he got a cold from Ryan so I had to cancel the appt.  The Dr said its a birth defect basically, the small nose and airway.  The RSV also caused damage.  He's a huge boy over 21lbs and 7mo.  The Dr did a scope and said his tonsils and adeniods werent the problem, they were very small.  The surgeon said no surgery because it would cause more issues with the scar tissue etc.  I really haven't gotten any more answers just the small nose and airway diagnosis.  He's off his reflux meds and honestly I don't think he was ever refluxing.  Ryan had severe reflux and Samuel was showing zero signs of it.  We saw GI a few weeks ago and he cleared Samuel.  I just want him to be ok.  He's the happiest baby I have ever encountered.  Ryan cries more than him to be honest.  

Quoting Momof4AEMW:

Hmm.  I would be talking to a doctor and asking for another sleep study being that he wasn't doing the log/head thing at the last one.  Sleep studies do check for seizures at the same time, but they can develop at anytime, so who knows.  My daughter has the tiniest of airways, small nose as you say.  We did remove tonsils and adenoids and are going back in now for lingual (?) long tonsils and base of tongue reduction surgery to try to help it.  She also obstructs 9-10 times an hour and drops her oxygen stats pretty low.  It is no fun.  Have they said the cause of the small/floppy airway in Samuel?  He appears to be a healthy/average sized kid when I see your pictures.  I just wonder if he is on a normal growth curve why his airways are so small and what the docs plan to do to help you/him through this. You mentioned no surgery, is that just because he is still so young, or do they not think it would help? My daughter has down syndrome, so we know the cause of hers and can't change that.  We just keep working with options to help her.  I know you've been doing lots of testing.  Did they give you any answers yet as to why this is going on?  Hugs!  I know you're stressed and worried!


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